How to Assess Pain in Nonverbal, Special-Needs Kids

While treating nonverbal children with complex medical conditions, hospital nurses often face the challenging task of assessing whether or not a young patient is in pain, according to a new study published in the American Journal of Nursing.

“While most kids can be in and out of the primary care provider’s office in under an hour for an ear infection, children with complex needs stay in the hospital for a week just to find the ear infection,” said lead author Brenna L. Quinn, Ph.D., R.N., N.C.S.N., C.N.E., of the Solomont School of Nursing at the University of Massachusetts, Lowell.

“Identifying pain early so teams may get to work finding and addressing the source is essential in avoiding long hospital stays, family stress, poking and prodding, or even surgery and death.”

For the study, researchers analyzed the symptoms, diagnostic testing, and nursing assessment of pain in 46 children with profound intellectual and developmental disability who are completely dependent on caregivers or medical devices (such as feeding tubes) for their care.

The patients ranged in age from infants to young adults (average age was 13 years). Most had several chronic conditions, most commonly seizure disorders and cerebral palsy; all were unable to communicate their pain verbally: where they were hurting, how much pain they were experiencing, or whether they were in pain at all.

The most common symptoms leading parents or caregivers to seek medical help for their child were abdominal pain or bloating, irritability, or other signs of pain. In some cases, the parents said that their child was just “not acting like herself [or himself].”

While in the hospital, the children underwent an average of five diagnostic tests, most commonly X-rays, and were evaluated by an average of four specialty services.

The children received more than 3,300 pain assessments; an average of seven assessments per patient per day. Since the children couldn’t communicate their pain, the nurses used a number of assessment tools based on observable pain behaviors (facial expressions, crying, etc).

The most common diagnoses were infections, including urinary tract infections (30 percent of children); constipation (20 percent); and increased seizure activity related to low levels of antiepileptic medications (13 percent). After other conditions were ruled out, a diagnosis of chronic pain was made in 22 percent of patients.

Although they represent a small percentage of hospitalizations, medically complex children use a high proportion of health care services.

“Like all patients, nonverbal children with medical complexity require a balance of standardized and individualized care,” Quinn and coauthors write. Based on their findings, they offer the following recommendations for pain evaluation in this group of patients:

Asking for and using the parents’ or caregivers’ knowledge of the child. As shown in previous research, the findings suggest that parents are often able to identify behavior changes indicating their children are in pain.

Assessing the presence of pain, even when the child appears to be sleeping or when there are indications of a change in mental status.

Being alert for potentially life-threatening sources of pain while also not overlooking more common problems like infections or constipation.

The researchers say more studies are needed in children with complex medical conditions, particularly those who cannot express their pain with words. Currently, the researchers are working to develop a tool to aid in comprehensive, efficient assessment of common causes of pain in this vulnerable group of patients.

“When pain assessment is inadequate or lacking, these children suffer unnecessarily,” Quinn and coauthors conclude.

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Traci Pedersen

Traci Pedersen is a professional writer with over a decade of experience. Her work consists of writing for both print and online publishers in a variety of genres including science chapter books, college and career articles, and elementary school curriculum.